COLUMN: A child’s fight for life exposes facts about organ donations

Tuesday

Jun 11, 2013 at 12:01 AMJun 11, 2013 at 4:27 PM

Mary Jo Festle

Sarah Murnaghan likely will die this summer without a lung transplant.

The 10-year-old from outside Philadelphia is in the end stages of cystic fibrosis, a genetic disease that impedes your ability to breathe. If Sarah were two years older, she may have received new lungs already from an adult rather than a child donor, of whom there are far fewer.

Now, in the Murnaghan family’s nationally publicized fight to save their daughter by having her added to an adult waitlist in addition to the pediatric list, another threat is emerging against an organ transplant system designed to prevent such perfect storms of medicine, media and politics.

I understand the Murnaghans’ willingness to take every necessary action to save their daughter’s life, and I feel for everyone involved. In 1990, I watched my brother John die from the ravages of cystic fibrosis. In 1996, I also watched my brother Bob benefit from a lung transplant in his own cystic fibrosis fight. Bob’s transplant offered him five additional years to graduate from college, teach elementary school and enrich people’s lives, including mine.

But as a historian who has studied lung transplantation, I don’t think it’s fair for those who want to save Sarah to characterize our existing national policy on organ transplants as arbitrary or senseless.

When Congress created the nation’s organ transplantation system in 1984, it wanted unbiased, consistent policies. The nonprofit United Network for Organ Sharing was tasked with developing rules to prevent discrimination or preferential treatment because of money, political clout or the savvy use of media to whip up public support.

UNOS first allocated lungs primarily based on the length of time a candidate waited, as long as the donor organs matched the recipient’s blood type and would fit the body.

Around 2000, the lung transplant community began reassessing its system. Too many people were dying on the waitlist, and people with certain diseases had a lower probability of receiving transplants. In addition, the federal government wanted UNOS to ensure policies were based on objective medical criteria.

The nonprofit’s Lung Allocation Subcommittee examined statistics from thousands of previous transplants, and the system today gives priority to patients with the most urgent need and the greatest chance of survival post-transplant. The subcommittee worried about pediatric patients, for whom there was much less data. It put pediatric cases in a separate category because lung size matters and children have different post-transplant courses.

Since that time, the Lung Allocation Subcommittee has periodically reassessed the system and made minor changes. It also set up an appeal process. Sarah’s appeal was apparently denied, for the Murnaghans recently turned for help from Kathleen Sebelius, secretary of the U.S. Department of Health and Human Services.

Sebelius acknowledged the agony of the situation but said it was not her place to unilaterally alter national protocols or make exceptions for an individual situation. Her request that UNOS again reassess its policies didn’t stop some critics from dubbing Sebelius with nicknames like “Cruella” and “America’s Death Czar.”

The Murnaghans next asked a federal judge to block the lung transplant rules because they discriminate based on age. The judge ordered Sebelius to temporarily add Sarah to the adult waitlist for transplants, setting a dangerous precedent. The Murnaghans’ legal success could be the first in a chain of lawsuits that quickly undermine our carefully constructed organ transplant system.

I’m not saying the public should have no voice in medical policies. Indeed, it’s important that we call attention to problems. Those who craft policies should understand how their decisions impact people. And public goodwill is especially important for organ transplantation, since most transplanted organs are donated.

But if we’re going to change our system, it’s crucial to follow an objective process that analyzes as much data as possible. The process has to be done with the best interests of all patients in mind, not simply one child, and slowly enough to get it right, even though the need is urgent. We are witnessing a rush to action with consequences we may later regret.

The Lung Allocation Committee has surgeons on it, including pediatric surgeons who helped write the existing policy. They desperately want Sarah and the other 1,700 people on the waiting list to live, too. They are not cruel.

What’s cruel is the disease that poisons Sarah’s lungs.

What’s tragic is the shortage of donated organs.

What’s agonizing is the decision of how to allocate those scarce organs.

I don’t know whether current policies should be adjusted, but we shouldn’t smear compassionate individuals dealing with extraordinarily difficult situations.

If your heart goes out to Sarah and her family, rather than rail against the system, consider telling your loved ones that you want to be an organ donor.

Mary Jo Festle is a professor of history at Elon University and author of “Second Wind: Oral Histories of Lung Transplant Survivors.”